Wednesday, August 11, 2010

Halleluja Chorus

Today I sing the praises of the emotionally-charged two-word phrase: normal biopsy.

A biopsy invokes fear in even the strongest among us. No one faces such a test without considering what if; without reflecting on one’s own mortality, and the impact his/her absence would have on loved ones (particularly children). I don’t think I’m unique in that.

It was my reaction to learning that something on a test looked suspicious – that a biopsy was indeed recommended – that surprised me. My knee-jerk response was, “Oh God, what will this mean for my RA – can I still take Enbrel?” Imagine that. Facing the possibility of a terminal illness, my instinctive response was fear surrounding arthritis – not cancer.

That, in a nutshell, is how serious arthritis can be.

I remember years ago, going through a stack of mail filled with requests from various charities. My general rule back then was to toss everything except requests from the American Cancer Society and the American Heart Association – the charities I unquestioningly supported, because those were the illnesses that were killing Americans. Arthritis may be painful, but it wasn’t deadly, and my funds were limited.

Now I know better. Arthritis can destroy quality of life. It is the leading cause of disability in the U.S. And despite the inaccurate characterization as a disease of age, arthritis affects people of all ages – including small children. For auto-immune forms of arthritis like mine, onset usually occurs between the ages of 25 – 50. I was 37.

Luckily for me, and millions of others like me, there is help, and there is hope. So for today, I give thanks that my biopsy was normal, and that I won’t need to learn what affect treating cancer would have on my arthritis treatment. Here’s hoping I never find out.

Sunday, August 8, 2010

It's Okay to Ask for Help

I was on my way to chaperone my son’s very first preschool field trip. It was November 2005, and we were visiting the local fire station. Andrew’s one true passion in those days was vehicles, and the opportunity to climb aboard a real fire engine was met with the kind of unadulterated joy and enthusiasm that only a three-year-old can muster. It was a moment I would want to hold on to forever.

As I grabbed my keys, I eyed the camera left on the kitchen counter the night before. For a brief moment my mind raced – you only get one first. I took a sharp breath and closed the door, leaving the camera behind.

You see, I knew I couldn’t use it. I simply couldn’t bend. And anyone who has tried knows – if you want to photograph a child, you must squat – and I couldn’t. All that I could photograph was the top of his head. I decided that some moments should be trusted to our memories, sans Nikon.

The trouble is, this was even more precious than I could have imagined. The exuberance, the sweetness – I wanted to capture it and hold on forever. I knew that as he would grow the memory of the chubby little cheeks and mushroom haircut would fade and morph into the big boy he would become. Damn – I wanted a picture.

I noticed another mom with a nice looking Canon. It took nearly the entire trip for me to gather my courage and ask, and at that, I was fortified only by a small lie.

“I was wondering, ditzy moment – in all the excitement, I forgot my camera. Would you mind taking a picture of Andrew for me?”

The following day she handed me an envelope. It was an absolutely perfect picture of Andrew, holding the fire hose.

I learned something valuable that day. It’s okay to ask for help. Sometimes, we can’t do everything that we want to do, or used to do, or believe that we should be able to do. Sometimes, we need to drop the shame, and drop the fear of vulnerability, and just come right out and ask. It sounds so simple and obvious, but I had a really hard time learning this. Maybe I couldn’t accept that I had RA, and didn’t think others would accept it either. But what I’ve learned is that people, for the most part, are kind. I’ve yet to meet judgment or pity when people hear that I have RA – only kindness. Help is there. Don’t be afraid of it.

Friday, August 6, 2010

What Are Your Triggers?

Some blame tomatoes. Some blame the weather. Some blame their spouse. Are any of them right? Having lived with rheumatoid arthritis for five years, I’ve yet to draw a conclusion on what causes flares. But I have made a few observations.

What are your triggers? I believe that the answer to this question will be different for everyone. It takes a lot of time, and attention to one’s body, before it can be answered.

When I was newly diagnosed, I did extensive research on this topic. An idea is circulating indicating that nightshades – fruits and vegetables such as tomatoes, eggplants, and peppers – are at the root of the inflammatory response, and should not be consumed. I experimented with elimination and re-introduction of these foods, and found absolutely no foundation for this claim. I read similar accusations against corn, and came up with the same conclusion: it was harmless for me. Dairy? Same story. Yet again, I eliminated and re-introduced it to my diet, and found that it had no effect. I tried limiting my protein intake, eating only plant-based foods, supplementing with glucosamine and chondroitin. I played guinea pig for months. None of it had an effect on me.

Yet I do notice that if I go a little crazy on sugar…pow - flare. I haven’t read a single report that even hints at a relationship between arthritis flares and sugar. Yet I have observed a pattern in my own body: too much sugar → arthritis pain. So I avoid it.

We’ve all heard old wives' tales about elder-folks who forecast weather via aches and pains. Can you tell if the humidity has increased, or that a storm is coming, by the way your joints react? I, quite often, can. Yet there seems to be no proof that weather causes flares.

On the other hand, stress has been proven to cause flares. In fact, it is suspected that stress may even be capable of triggering the onset of the illness. Stress can wreak havoc on our lives in so many ways. This is going to sound cavalier, but I mean this sincerely, we need to avoid it. That may mean yoga, or meditation, or breathing exercise. It may mean taking a walk, or turning off the news once in a while. Learn what de-stresses you, and start doing it!

Another known set of triggers – even less controllable than stress – are viruses and bacteria. While we can’t control what’s floating around out there, we can do the little things – like washing hands more frequently and wiping down the shopping cart before taking a spin around the store.

Conversely, I’ve found that exercise decreases flares. If I stop working out, I start having more and more pain.

In my experience, keeping a journal was a tremendously helpful tool for identifying patterns of flares. What was I eating? Experiencing? Feeling? What was the weather like? Knowing what brings on a flare is empowering. Who couldn’t stand a little of that?